Hi welcome to reaching out I'm your host Cam Kerry and today we have Sharon Waldrop
who is the director and founder of the fibromyalgia Association of Michigan welcome
to thank you know families here and so happy to be here thanks so happy to have you
OK Very good so why don't we start by telling us what fibro my algea five
are my all just
a complex kind of pain illness that affects about ten million Americans which is
about five percent of the people in our country and it affects women men and
children of all races and again all ages it does seem to affect more women than men
right now however why is that. A lot of research is going into that now to
understand why there's such
a disparity in the numbers between women and men having the condition but I do
think that possibly with the research that's being done we may find that there's
actually more men out there with the condition than than who are just they don't
know they haven't gotten a diagnosis of fibromyalgia yet OK We were speaking
a little bit earlier and you said that it could be hormonal as to why women have
this illness. I think that there could be some truth to that and I know that people
have requested more studies on the hormonal link because obviously that is one
major difference between men and women's bodies so you know possibly there's
something there that needs more investigation and I know personally for me and also
other women who've had children while they've had fibromyalgia. There's there's
changes that go on with the body some people actually improve their symptoms get
better when they're pregnant so that's one theory why I think there could be
something to that too with my personal story that I'll share with you on the show
after my children were born I before they were born after I was diagnosed with
fibromyalgia I had
a very difficult time walking and stairs were just next to impossible for me and
after the birth of my children I'm able to do stairs again so wow so that America
Yes that's awesome OK But before we get into your story. Tell us why you
form the association and how it came to be sixteen years ago when I was twenty four
I was diagnosed with Fibromyalgia and I was twenty four and working
in my first job out of college and just you know having
a great time I was very active I love to exercise I would ride my bike ten miles
a day I'd love going down to Metro beach and I would you know go along the parkway
there riding my bike or roller blading might also three days
a week go to the gym and work out with weights and fiber my old to hit and when
that happened to me walking from my bedroom to the kitchen which in
a twelve hundred square foot house I would literally lay down and need to take
a nap on the floor because I was so fatigued from that walk in and so much pain
that I would have to rust and you were young you were twenty four. I was twenty
four so what was going through your mind when this happened did it happen suddenly
one day or it was
a progression over about. Oh about four to five months and.
I have other conditions one of which being T.M.J.
Which is
a job disorder and I was diagnosed with that at the age of eighteen and it turns
out that I have no job joint left and the doctors are trying to figure out why at
eighteen I don't have
a job going so on that journey to discover what was wrong with the jaw I was
diagnosed with fibromyalgia which I'm one of the lucky few because on average it
takes about five years for people to still get
a diagnosis with fibro my allergies and why is that share it's difficult to
diagnose there's a lot of symptoms that mimic other diseases there's
a lot of overlap between even other conditions often people with fibromyalgia have
other conditions as well perhaps all. In Are social cystitis full of
Adin. Chronic fatigue syndrome so there's Of lot of other things. They
could be different for example or say rightists are very similar so. The fiber
my all just symptoms also mimic amassed LUPUS so at the beginning when you're
trying to figure out what's going on when you have these symptoms
a doctor will rule out and masts and lupus and some of these other diseases that
are very similar and they do that because it's important to discover if you have
one of those and start treating those and if you don't. You know then they know
that they can move on to some other diagnosis like fibromyalgia Well how did the
doctors go about narrowing it down to this is what it could be what are the
tests what are what did they do well first it's important that they do rule out the
other condition so then. Second they take a wide the take
a history. And that's just you know use to time with your doctor face to face and
talk about what your symptoms have been sent six started to occur and you know made
me even explore beyond that and see if you've had chronic widespread pain for
longer than
a couple of months see if it's happening in all parts of your body they also still
look at things called Tender Points which the American College of Matal and you
came up with the tender points in one nine hundred ninety that helped physicians
was one of the first test to really guide physicians and this is how you can more
easily diagnose fibro my own show and so they can look at these tender points in
your body and there's eighteen and previously they thought if you have eleven of
eighteen of these sign you have fibromyalgia but we now know that the tender points
are really
a way for for scientists to research fibromyalgia so looking at the tender points
is important but you could have less than eleven and still have fibromyalgia you
could have more and you certainly do have fibromyalgia so it's
a helpful tool in helping the physicians you know diagnose five from my own so many
physicians are able to make that diagnosis by ruling out the other conditions and
also by taking that history and discovering together what your symptoms have been
and in the pain that you're in and how long that's been lasting So is it in the
muscles and the joints or one of the other the penis felt throughout the entire
body so it's usually felt more like in the soft tissue areas of the bodies but
certainly the pain can be felt in the joints. Muscle tissue.
Everywhere. You may if you're watching this show any of see Eve seen the tender
points for fibromyalgia that doesn't mean that those are the only areas in your
body you'll have pain it could be anywhere it doesn't just have to be at those at
those points and to. Somebody with fibromyalgia when I go and I was just at the
rheumatologist and you know anytime they touch it's like yes that hurts that hurts
that I heard it's my body ascender everywhere case so as if you were to touch me it
wouldn't I would not be tender right so that's. A signifier Yes that could be five
that's right OK OK so it takes you said up to five years for diagnosis and you
form the association to bring more awareness tell us more about that yes well
that's I was starting to say when I was diagnosed sixteen years ago I really
started to learn more about fiber in my Also I had never heard of it I couldn't
pronounce it right when I was diagnosed with it so you know any information I could
gather I wanted to you know read it and go to
a conference which sixteen years ago there weren't
a lot but I was fortunate to go to
a few and. At that time the Arthritis Foundation was doing training for
fibromyalgia support group leaders and I thought wow that's
a great idea I had attended
a support group but I cried all the way home because when I got there I was by far
the youngest person in the room and then half of the people there were in
wheelchairs and walkers and it was it was really kind of
a pity party where we were sitting around talking about how bad life is that must
have been discouraging to walk into a room like that it was I cried I mean it's
a thirty minute drive and I cried all the way home and you know I was really
depressed for days after that thinking OK I'm twenty four I'm not married you know
I'm just beginning my career now my career is over how am I ever going to you know
find
a partner who would want to live with somebody with this kind of condition so it
was devastating and when the. Foundation said they were doing
a support group leader training I thought you know I would love to start
a support group that brought people information but in
a very positive way to empower people to take. Troll of their health so I started
the support group in one thousand nine hundred seven and over the years with the
help of some really great volunteers with the support group we did you know we kept
growing our vision for what this group could be and what we could do in the
community and we started doing community events and in two thousand and one we
hosted our first Michigan fibromyalgia Awareness Day And so with all of these baby
steps we were taking in to
a large organization finally in two thousand and three we incorporated into
a five zero one c three nonprofit called the fibro my allergist so see the Michigan
excellent excellent So aside from the support groups did you seek any type of
outside there to help you cope with the illness. Yeah there's
there's so many things that people can do with fibromyalgia and myself included too
the first step I think really is education and learning more about the illness and
how it's affecting you so I finally found
a physician that I was comfortable working with I think that that doctor patient
relationship is so important and you want to find somebody who you know understands
your condition understands you and together you can work together I really feel
that the patient is the captain of their health care team and so you need to hire
people to help you be on your team and help you manage your health because
ultimately at the end of the day you have to be the one in charge when I know when
you're sick the last thing you want to do is think about while I have to manage all
of this. It's not as overwhelming as it sounds it's
a little steps and so you know first finding
a doctor that you feel comfortable with and that you know is knowledgeable in
fibromyalgia and can guide you on you know treatments and therapies that you want
to that you want to try everybody with fibromyalgia reacts differently to the.
Treatments there are great medications or three that are now approved by the F.D.A.
. There's also. Commonly people with fibromyalgia will take antidepressants that
will help with sleep so people hear the word anti-depressant he said but I'm not
depressed right and it's not for that it's for sleep there's also depressants can
also help with pain and then there's other pain relieving medications that can be
used. In addition to medications or so much more that you. That you need to
incorporate into in terms of managing in terms of illness that's right. Your diet
diet exercise is managing your sleep about ninety four percent of
people with fibromyalgia have sleep disorders and it's kind of
a chicken and egg situation where they don't know which one came first OK you as
a patient It doesn't matter you just want to sleep you do you do so so there's
medications that can help with that there's also simple more should I say easier
things than possibly medication if you're someone who's
a little shy of medication. Again it might be necessary for you to take
a medication but sometimes there are sleep what we call Sleep hygiene techniques
where you know are you sleeping in
a dark room are you going to bed at the same time every night and waking up at the
same time so that things you can control those are the things that you can control
and in this strategy of basically there's there's five things to use
a medication so we've kind of touched on diet exercise sleep and then stress
management yes it's you have to be doing all five of those things in the the great
thing is that when you find something in one of those areas often it affects the
other areas so if you improve in one area another area might improve OK however you
can not do one of those things and expect everything to get better as well. And so
with like the stress management that something that another step that you can do
often I. In your own but then that might be a great time to to bring in
a psychologist or
a counsellor who can you know maybe Guy you with if you are having depression or
anxiety which just happen to people with fibromyalgia. It can be kind of
a co-existing condition but it also could be when you're living with
a chronic illness I don't feel bad that you might be depressed who wouldn't be
depressed sister when everything about your life changes rather quickly too you
know and speaking of those changes you were so young you were so active. That in
your mind was taken away from you but you have regained that you were back to
exercising tell us what you do. Well what got me literally walking again was
water aerobics Wow and I loved it and I have to say if you haven't tried the pool
you've got to find the right pool you know want to be cold because when cold in
your tummy then your muscles hurt all over again right but if you find
a pool that's
a right temperature it's fantastic I mean there were times where when I was in the
water I was pain free you know you just you felt so good so I highly recommend that
one especially if you're having
a difficult time moving the water is so soothing and takes stress off your body
being in the water so it's
a gentle or form of exercise but there are other gentle forms to try to use create
There's some really mild yoga that's wonderful. There actually exercise videos that
you can buy for fibromyalgia and you know if all of that if you're sitting at home
and you're watching this and you can't move I have been there and like I said I
know what it's like to walk
a few steps and that's it you're done for the day that's all the exercise you can
tolerate but the important thing is to talk to your doctor about you know what you
can do with and maybe start slowly with just walk to your kitchen every day and
gradually you'll be able to walk to the end of your driveway right as I knew you
walked two doors down and you just keep going and then build on the six like you
that's what I do why don't I could be on the move when I was doing the water
aerobics that got me moving again so there's a lot of
a lot of things that can be done I'm so happy for you with that. There's an
interesting story that you shared with me and that like you to share it with with
our viewers. When did fibromyalgia become
fibromyalgia and tell us the story behind that OK I can't remember the year that
the fibromyalgia term was first used before that it had other names like fibro
situs but it goes all the way back to the Book of Job in the Bible researchers that
I've seen at meetings can point out excerpts from the Book of Job worth he
describes the pain in the fatigue in the feelings of five for my ALSA well so
researchers believe that this illness has been around a long time it's been called
a lot of different names so it's been you know progressing through the years even.
Internet international fibromyalgia Awareness Day The reason May twelfth was picked
for that day is that Florence Nightingale spur thing and the founding group that
started the awareness day efforts realized in research that she had
fibromyalgia like symptoms and probably chronic fatigue and so more than likely
Well it wasn't diagnosed back and she did have fibromyalgia and maybe chronic
fatigue syndrome so that's that's how the May twelfth date was selected for
Awareness Day and. Starting two thousand and one our group wanted to you know
recognize that they and celebrate that day in Michigan and so we've started an
event held one every year since two thousand and one recognizing the day and
raising awareness here in Michigan to help people understand what it is and
hopefully if you have some of these symptoms and you're not getting
a diagnosis you know maybe you can talk to your doctor and see if that's you know
a possible symptom you might be having we don't want you to wait five years before
you get
a diagnosis in that time I know just from the work I've done over the fifteen years
. So much changes in your life if you're not getting help and if nobody below.
Leaves that you have an illness and so the quicker we can get you on the road to
understanding what you have and knowing the treatments you know hopefully the
better you'll feel and. The less disabled you make become from the illness.
Well it looks like you're getting a lot of awareness you brought this today it's
a resolution from the Senate Yes that's correct every year since two thousand and
one we've reached out to our government here in Michigan and work with some really
wonderful representatives in the house and senators in the Senate to have
a resolution acknowledging May twelfth as Awareness Day here in Michigan so every
year we go back to Leon saying and they've given us another proclamation and we've
talked to the the new people that we haven't reached out to before than just you
know continue our relationship with the better that we that we do know from before
. Well very good which brings us to your conference so tell us when it is
it's on Saturday May fifth at Saint John McComb Oakland hospital in Warren Michigan
and that's from twelve thirty to four fifteen Dr Carol B.
Else who is the founder of the Beales Institute in Lansing will be our speaker
She's been researching fibromyalgia for over thirty five years and she's just
a wealth of knowledge and very humorous too and then we also have Laura Russell
who is from the wellness clinic and she will be talking about how to cope
positively with fibromyalgia OK OK So it's
a great event we encourage you to bring your family members and friends it really
helps the whole family if you can come together and learn more about it we know
that family members struggle too with the illness because it's so invisible so hard
to understand you know one sec. You do you feel fine the next second you know you
don't know for me that's one of the hardest challenges with fibromyalgia is you
just never know you know how you're going to feel and some of that can be restored
through things like journaling and different tracking things that you can do to
start to realize what what flairs your condition what makes it worse so there are
actually some things that you can do to kind of take control that so you don't feel
so you know I don't know why this is happening you can you can learn some of that
but I still struggle with that and I know that you know have I have two small
children yes you do and they they understand what's going on with me pretty much
you know I'm sure they don't you know fully understand it but you know both my
children since the age of I don't know two or three could say the word fiber my.
Kids are real smart. And you know they know that you know mommy has fiber in my
Elza and some days you know my eye is very comforting for me sorry for ice packs at
all put on and you know sometimes I just need to lay in bed and they can lay in the
bed and you know watch the T.V.
Show with me I try to work around you know what we can do but one coping skill that
I found with them is you know some families will tell their children oh well next
week we're going to go do this sector pretty I don't do that because if I'm not
feeling well then you know that leads to restoration because they knew about
something really fun and now we can't do it right which is
a disappointment that's right and that was hard on me because you know when you
don't feel good and now you're disappointing your child that makes you feel worse
and that's very key because you're you're letting us know that you have to know how
to communicate. Effectively when you are dealing with in illness so that you
don't create more stressful situations in terms of disappointing the children and
you have two beautiful little boys tell us their names Cooper is eight and is six
OK Well tell us how they help you out. Always putting
a smile on my face you know it's you know if you are having
a bad day you know watching them brings
a smile to my face and thinks you know takes my mind off of it but I know I must be
doing something OK because you know they think they're playing pharmacy and
conference call I'm involved in
a lot of conference calls with my work here and when I'm also the vice president
for the National Fibromyalgia and Chronic Pain Association so they're used to
seeing me on the phone and talking to people so I think they're adjusting just fine
to one mom with chronic illness Well we really do appreciate you coming in and just
talking about your upcoming conference and event and just giving more awareness to
fibro my Al just so we really appreciate you thank you. Thank you so much for that
well that's going to do it for us here at reaching out thanks for watching.